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SaraC628

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About SaraC628

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    Advanced Member
  • Birthday 06/28/1981

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    Female
  • Location
    Appleton, Wisconsin

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  1. Orthohypo, I am in Wisconsin. I see a specialist at Froedtert in Milwaukee.
  2. The weird thing with the Florinef is that I have been on it for months with a minimal increase in BP, but suddenly it went much higher than I have ever seen it and they were all completely resting. I skipped all doses on Thursday and then went back down to .2, but my BP is still sitting higher than I normally see it, even after standing and that is when mine gets low. I also realized that I did not even do my excess salt the day before the big spikes. I have tried Midodrine and I hated it, it made me so tired that I had to prop myself up and fight to stay awake. I am really wondering how the body responds if my OI suddenly goes away while on all this medication?!
  3. Hey OrthoHypo, I finally heard back from my doctor and they were not all that concerned with my BP but they did say to skip my meds today and then go back down to .2mg tomorrow. They also told me to call my PCP and ask her to order a potassium test to see where the levels are just to be safe. Apparently, .3mg is a little high for me, however .2 wasn't doing the trick. My BP finally calmed down around 12 or 1 this afternoon after being propped up in bed all day. Luckily, my autonomic specialist is great so far, but he is two hour away. My local neurologist apparently just likes to be difficult! I was diagnosed with migraines recently so that may have caused the headache on its own. (Personally, I think the headaches are so bad because of the Florinef, but since on the Florinef I don't feel like I am going to faint all the time.)
  4. I know exactly what you are talking about. I got on a guacamole kick several years ago, like 9 or so, and then after eating some one night I got really nauseated. I could not say the word or think of it without almost puking for at least a couple of years. And even now I get a little queasy talking about it. And last night I was feeling really sick and I remembered what I had for dinner and I swear I could taste it and I went running for the bathroom!
  5. This was the first time my BP has gone this high. The venafaxline can increase BP as well. That was started just over two weeks ago and my Florinef was increased the same day. I have had the headaches on the prior dose of Florinef. I have a call into the doctor because I was technically supposed to increase it again to .4mg.
  6. Hello, I need some help ASAP! I have been taking Florinef for a few months. I increased to .3mg per day just over two weeks ago. I was also prescribed Venafaxaline(sp?) around the same time. This morning I woke up around 4am with a huge headache so I checked my BP to make sure it wasn't too high. Sure enough it was 131/103 with a HR of 127. This was after being propped up in bed. I tried sitting up for a while and continued to check it. These are the readings: 130/99 HR 114 139/98 HR 82 151/99 HR 83 128/97 HR 90 144/87 HR 84 141/100 HR 119 All readings were completely resting. I am not anxious or anything. I have Orthostatic Intolerance so I typically have lower BP and the only time I have ever had my HR reach 130 was after doing some household chores. I have not even taken any of my medications this morning. I have a call in to my doctor, but I am wondering if anyone has had a sudden onset of high BP and HR when resting. Oh and my hands got tingly for a few minutes. The nurse told me to call 911 if I start to experience any shortness of breath or chest pain. I should add that I am only 31 and not at high risk or heart disease. I have had an echocardiogram in the last year that was completely normal.
  7. According to what I have read, he was diagnosed with Orthostatic Intolerance. This is my diagnosis as well. With mine the only autonomic testing that was off was the actual tilt table. According to my autonomic specialist, OI will simply go away or ease up over time for most people as long as there is not an underlying condition. Maybe his symptoms simply eased up on their own? He wrote an autobiography called Now and Then. Maybe he talks about his recovery in that.
  8. So the crazy thing is that I asked my autonomic specialist about this particular symptom and he had no explanation. Interesting....
  9. Kelly, I think is part of the issue with our son. His OT has discussed sensory issues with us. Aaron is the opposite of Ronny though, Aaron seems to have a lack of sensation. We have continued to tell his doctors that he has a super high pain tolerance. In fact Aaron never cries. His OT discussed that he possibly did not know where he was/is in space. I don't think that this part of our son's issues made sense to my husband and I until your post. Aaron does not like commotion and he gets easily overwhemed. I realized that the times I have gotten him to repeat something, which is really rare, it has been just him and I in a quiet room. Did your son seem to learn a new skill and then forget it? Aaron for instance learned how to clap and did it for about a month consistently and then he just stopped and even now at 20 months very rarely will clap. The same thing happened with waving and several other tasks. I have said several times that I feel like he is trappd in his mind. Aaron does not display the classc signs of Autism. I did read up on sensory integration disorder and it appears that it can be part of something bigger. Katie, Thanks for the info, I am going to look into that board. We have an appointment on Tuesday with the genetics doctor and I really like to go in there with some ideas.
  10. I have terrible long term memory. I don't remember names of most of my teachers. I too have memories told to me and I have no idea. I have always told my husband that I don't remember most of my childhood. I remember bits and pieces, but not a lot. I also have really good short term memory, well it is worse since this illness, but still pretty good.
  11. So this is probably really far fetched, but we have been looking for answers for a while. My 20 month old son started to show severe deveopmental delays at 4 months. He ended up being diagnosed with low muscle tone and hyperflexibility in the joints. He has a slightly sunken chest and some barely there facial characteristics that are different. He is not walking, he will take 4-5 steps on occassion. He his mentally about 8-10 months. He does not talk, he babbles. The genetics doctor was certain that there is an abnormaility, but has not been able to find it. Most recently they completed a 90 gene x-linked mental retardation panel which was normal. All of the doctors at the genetics office were certain that was where we would find the abnormality. I had a difficult pregnancy, 2 vessel cord, gestational diabetes, and was literally in labor for one month. He was born at 37 weeks and 2 days. I am starting to wonder if there is a possibility that his issues are linked to my orthostatic intolerance. I was never myself again after the pregnancy, but did not get significantly ill until he was three months old. I am just wondering if anyone out there has had this happen to them. I really wonder if he just didn't get enough blood while in the womb. I have asked the genetics doctor about EDS due to the hypermobility of his joints, but because there is not really a test to confirm it and it would not explain the delays he is not ready to say that is it. I have nothing to suggest that I have EDS. I find this part interesting because I know that several people with POTS/OI have EDS. He has had a MRI of the brain without contrast and that appeared normal. I just want to figure out what is wrong so that we knwo how to help him. He is already in PT, OT and speech therapy.
  12. My barely 12 year old diagnosed me!! We were watching the Mystery Diagnosis episode on Orthostatic Intolerance the day before my autonomic testing. He had no idea what my testing was for and I barely did either. I was half paying attention to the episode and he was kind if reading a book too. All the sudden he looks up and goes that's you mom. I told him it didn't really seem like my stuff and then they explained the tilt table test and I almost fell off my chair. Sure enough my testing was positive for OI. I had seen more than a dozen doctor at that point!!
  13. Ash, all of your symptoms are really similar to mine. I do get periods of being super hungry. They don't stick around very long, maybe a week at a time. But during those times, I can eat a full meal and still want more. I know that I am not really doing anything different to bring on the change. Sometimes I wonder if I finally got more hydrated than usual, but I don't really think that is the case. I have figured out that I don't feel any better when not eating gluten or cutting out sugar as far as my digestive symptoms go. I wish I could figure it out though. I find it really interesting that it is a cycle. Eating normally or not eating does not seem to affect my other symptoms, aside from feeling a tad bit weaker than ususal. This illness is such a mystery!
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